chronic critical illness

Background: Infants with medical complexity are increasingly cared for at home, creating unique challenges for their caregivers. The sickest of these are those with chronic critical illness (CCI). These infants’ medical fragility and resource‐intensive needs puts them at increased risk for suboptimal transitions from hospital‐ to home‐based care. It is unclear whether, and if so, to what extent clinicians gather and use knowledge of a family's home context during discharge planning.

Objectives Little is known about the experience of family caregivers of patients who require prolonged mechanical ventilation (PMV). We examined the perspectives of caregivers of patients who died after PMV to explore the role of palliative care and the quality of dying and death (QODD) in patients and understand the psychological symptoms of these caregivers. Methods A longitudinal study was performed in five hospitals in Taipei, Taiwan.